Thanks Barbara, I really appreciate the response. Yes the nurse has said that they will give me BG monitor so that they can monitor the readings better rather than using mine. I did actually go to A&E a week on friday because my reading was 33. They tested me for ketones which were 0.4. All my other vital signs(kidneys liver etc) were in range so they eliminated diabetic emergency and referred me for urgent attention of my GP
It does sound, in my non-medical opinion, that you do need to be on insulin. That may sound like a worse scenario than just oral meds, but if it restores some stability to your world and also puts you in a more pleasant state daily as well as a less damaging state than consistent high BGs - so be it.
The important thing is to get the right diagnosis and thus the correct category of Diabetes attributed to you. Because about 90% of people with D are T2, this disease is considered by the rule makers (NICE) to be treatable by GPs in their Surgeries, whereas T1 is referred to Specialist Clinics, usually in Hospitals.
Some T2s don't respond sufficiently to oral meds and end up needing insulin; they remain T2 and still treated by their GP; but sometimes those T2s are re-diagnosed to T1 - which they always were - just wrongly categorised originally. They should then come under the Specialists.
Those whose diabetes is actually because their pancreas is damaged (remember that T2s are producing sufficient insulin, but their bodies are resisting the insulin that is there, they have not got a damaged panc'y) are, strictly, T3. I say strictly because, surprisingly, a high proportion of medical folks are not aware of the T3 categorisation; my own GP wasn't. Fortunately that is slightly improving. Which 'flavour' of T3 depends on what caused the pancreatic damage; sub-categories go from a-k (I think). However, no matter the 'flavour' unless the T3 D is responding satisfactorily to T2 oral medications (and it sounds as though yours is not) then it is both appropriate and sensible for your GP to refer you to the Specialist teams. They understand the many types of insulin regimes and the initial contact point is a Diabetes Specialist Nurse (DSN) - not to be confused with the diabetes nurse in a GP Surgery, who deals predominantly with T2s on oral meds. The DSN has a great deal of autonomy, but also has relatively ready access to an Endocrinologist. If a change is needed to your meds then a DSN can recommend that change to your GP who will almost always write that prescription, accepting the authority of the DSN.
That is the theory. I was discharged after surgery as T1, which I never was. I had no pancreas, but not because of any autoimmune problems preventing me from producing insulin. My GP took my written T1 at face value; my first DSN was charming and helpful, but had no idea of the wider problems of having no pancreas and didn't know about T3 or T3c. My DSN and my GP colluded behind my back to ration my test strips and I had to wrestle with that stupid decision from 2 medical folks who'd stopped thinking about the consequences of no panc'y. Fortunately my rationale overtook their rationing. I dumped my first Endocrinologist who was useless. I got myself moved to another Endo, who seemed knowledgeable and who promised, in writing, to do certain things to improve my D management. Those promises were not even started so a few months later I got myself moved to a Centre of D excellence, in a different County and almost magically things improved hugely. I was lucky. I tell you this personal tale not to alarm you, but to alert you that T3 diabetes, ie from damage to a former healthy pancreas, is not widely understood and even the Specialists sometimes don't help as much as you might need. I have the D, it is in my interest to find the right person and steer my treatment, using the Specialist's skills, knowledge and prescribing power!
Anyway, it's now a further waiting game for you. If you are not a proper T1, then persist in getting your GP to accept that you could some flavour of T3 and get you referred specifically to an Endocrinologist; you might initially be outside the everyday knowledge of a DSN. With such high BGs it seems (again in my non-medical opinion) that you are digesting what you eat and the carbs are converting to glucose and reaching your blood stream. Many T3s need digestive enzymes supplements, which in medical parlance is Pancreatic Enzyme Replacement Therapy (PERT), because their damaged panc'ys have resulted in loss of or reduction of digestive enzymes - but that may not apply to you. There are different tests to verify that, which I didn't need! But I did have a malabsorption problem which plagued me post-op for almost 2 years; not only dreadful bowel problems but unpredictable conversion of carbs into glucose, thus carb counting not well related to insulin dosing.
Gary Scheiner in his book "Think Like a Pancreas" states:
Diabetes is complicated, confusing and contradictory.
So true, before one factors in pancreatic damage! Good luck, please keep us updated.